Xeroderma Pigmentosum Family Support Group

The Xeroderma Pigmentosum (XP) Family Support Group exists to improve the quality of life for people with XP and other diagnosed UV light conditions. The Xeroderma Pigmentosum Family support group strives to create awareness and educate the public about XP, as well as to raise funds to promote research, create collaborations with international XP partner organizations, and provide family grants for UV protective equipment and travel assistance for attending the annual XP national convention.

- Biannual medical research conference that brings together patients/families and XP researchers
- Biannual international XP research conference that connects international researchers and families
- Firefly Kids Camp to allow children with XP to enjoy fun activities with one another, often getting to know another XP patient for the first time
- XPYA Young Adult Meet Up for adolescents and young adults
- Providing new XP families in the United States with a UV meter and instructions for use
- Providing XP families with face-protecting plastic for making a UV blocking hood
- Providing XP families with donated window tinting for home and vehicles.
- Providing XP families with protective gloves at a steeply discounted rate
- Online outreach with printable resources to educate the public about XP

XPFSG has partnerships with the National Institutes of Health/National Cancer Institute, as well as NIH-funded researchers at other hospitals. These resources serve both as medical advisors and as medical conference participants.

XPFSG has partnerships with companies that provide gloves, window tinting, UV-blocking plastic, and UV monitors to our patients.

Newly diagnosed families receive a personal contact as well as a box of resources upon referral.

XPFSG maintains an active international partnership with other XP organizations.

Our most recent (2018) public awareness campaign has reached at least 130,000 people at last count. We have also just concluded our first international research conference. All 12 new families referred in 2017 have received individual mentoring, UV monitors, plastic, and any requested window tinting (6 families).

Up next is the 2018 National XPFSG Medical Research Conference. This will include the medical conference, family conference, and Firefly Kids Camp. It will also include an XPYA Young Adult Meet Up track, which is new to XPFSG and will be the first of its kind in the world. This represents a major accomplishment as with implementing the strict sun protection measures, youth are living longer and becoming stronger advocates for their own health.